Follow us as we share our thoughts and experiences from the idiopathic scoliosis diagnosis in March 2014 through to surgery and recovery. As told from the perspectives of both parents and the (at time of diagnosis) 12 year old patient (and maybe even some observations from her little brother). Ontario, Canada.

Sunday, October 26, 2014

I want to talk about what happened last week and the profound impact it's had on me, and how I feel about charity and giving.

A few months ago a Facebook friend of ours had to have surgery. Brain surgery. Real dangerous stuff. He's the real estate agent who drove us around for two days back in 2009 and showed us almost 30 homes and ultimately helped us buy the house we have lived in for the past 5 years. He even did the final walk through so my wife and I wouldn't have to fly in from Ottawa to do it. We've stayed in touch on Facebook since then and followed the changes in his life, as he and his wife had their first child and then proudly announced earlier this year that another one was on the way.

During his surgery he almost died. He started to bleed and wouldn't stop. There was something like a 1% chance of this happening and it did. It took blood donations from 60 people to save his life. They pumped 12 litres of blood into him to keep him alive. 12 litres. His body only holds 4. He came out of surgery without a single drop of the blood he went in with - 3 times over.

Healing and grateful to be alive he decided to give a little back and hold a blood drive down at the local Canadian Blood Services location in Waterloo and he asked all his friends on Facebook if they would consider donating.

I had low blood iron for the longest time and then was on some pretty fun medications after that and had never donated before. Being med free and with a healthy hemoglobin level right now the only thing stopping me was a healthy fear of needles and queasiness at the sight of blood, which seemed like really lame-ass excuses. So I booked my first ever appointment to donate blood for Tuesday of last week.

Then, in what can only be described as a karmic twist of the Universe, the Monday before my blood donation appointment Jodi and I found out that Avery does not weigh enough to bank her own blood before her surgery. You see, she has severe scoliosis and needs to have spinal surgery in the new year to have metal rods cemented and screwed into her spine to keep it straight. It's a 10 hour surgery and if not everything goes as planned she'll need blood. Better it's her own than someone else's too. Only now that was not possible.

Jodi cannot donate because of some funky rule that prohibits donations from people who lived in France for more than 3 months during certain years. Seeing as she lived there for a year during one of those years she's ineligible (something about mad cow disease and not being able to test for it until after you're dead). I will be tested for compatibility (blood type, antibodies, etc...) and if I'm a match I will provide a directed donation to have on hand for Avery's surgery. I'll only be able to donate a couple litres though. A worst case scenario would see her needing more than what I can offer.

That means there'll be blood on hand from the blood bank. I really hope none of it will be needed, but it's awfully reassuring that it's there if it is in fact needed.

So on Tuesday I went in and donated blood for the first time. It was almost completely painless, everyone was very supportive, and I got to have juice and cookies afterwards. My friend was even there talking with all the people donating and thanking them. If I'm being completely honest, I felt really good about it. The best way I can describe it was that I felt like I was making an immediate and profound impact on somebody's life. I went home afterwards proudly sporting my "First Time Donor" pin and feeling great (though getting out of bed the next morning was a challenge. I was really tired!)

I've been telling people this story ever since and am encouraging everyone to go find out if they are able to give blood, and if they are to please donate. It makes a difference. It saved my friend's life and could very well save Avery's.

Avery had her MRI (I have said 'we had an MRI' a few times, but really, she was in alone) today. We were out the door by 8:15 for our 9:15 scheduled appointment in Hamilton. While in the Tim Hortons drive thru on our way there, I suddenly became concerned that maybe we needed to be there half an hour early for paperwork, but luckily my GPS had up set to arrive at 9:00, so I figured that split the difference.We arrived around 9 and parked in the blue section, right beside the elevator - such luck! Then we went to get the elevator to go up one level... and waited. Seriously, we waited maybe 10 minutes. But there are no stairs in the blue level and never having been to blue, I was not sure on a Sunday at 9 am I could get from yellow to blue... so we waited. Finally in the elevator and up one floor to 1 where we needed to buzzed in to the MRI section. On arrival, Tammy the MRI receptionist informed us that they had an emergency patient and were running fairly behind schedule, like at least 2 hours, and there was word that another emergency patient was coming down, so maybe 3 hours. We decided to wander the hospital, so now I know that McMaster is a box and you can in fact get all the way round, even on Sunday morning at 9 am. (and no paperwork needed. It seems the computers actually transmit information here)After a half hour wander, we came back to see where things were at and were told we still had a couple of hours, but for certain 1 hour as both machines were in use, so we went to have breakfast at the Maple Leaf/Tally Ho Pancake house - the place where Andrew and I had breakfast the day we decided to date - 19 years ago, almost exactly (October 20, 1994). I paid for our meal when I ordered in case we got a call to come back, so we just relaxed a bit - Avery was happy to eat peanut butter on her toast, a luxury she cannot have at home with her anaphylactic brother around. This pancake house is right beside Ronald McDonald House, and I am pretty sure the family that sat beside us was staying there. We headed back to the hospital, got the same parking spot! and a much quicker elevator ride back to the MRI area, Avery was given a lovely cotton hospital gown and before she could sit down, she was called back to her scan.I made Avery wear yoga pants and a t-shirt and change her bra so she had no hooks because I recalled reading that she may have been able to wear her own clothes. Turns out I was mis-informed because recent event have noted that many yoga pants contain silver threads - and they are not magnetic, but they are conductive and can apparently burn you. So no yoga pants. Cotton panties and a hospital gown to be safe. She also got to watch a movie while in there - how cool is that?So 45 minutes, maybe an hour passed and out came a very flushed and very loopy Avery. She said she fell over and hit her head in the change room trying to put her sock on. After about 5 minutes I got up to check on her as she didn't have that much clothing to put back on. She was loopy. I had an MRI a couple of years ago, and I too was loopy, so at least I got it, but she was not pleased with the loopy feeling.We left the hospital and went to a mall (her choice - she said she didn't want to go home yet) so I took her to Limeridge and we did a quick tour of the mall. I mentioned she was loopy? We went in to Gymboree (I really wanted the tie shirt for the Dude, but alas, none in his size) but while I was looking, she looked at the Eric Carle section, and they had the book Brown Bear, Brown Bear, What Do You See? and she lost it! She came over ranting about how it makes no sense! No sense at all! Then brought me over to explain - you see the first page reads "Brown Bear, Brown Bear what do you see? I see a red bird looking at me." the next page reads "Red Bird, Red Bird, what do you see" and here is where she lost it - the Red Bird sees a yellow duck! But the Brown Bear said the Red Bird was looking at him! So how can the Red Bird see something other than a Brown Bear?!? I really wish I had of recorded it. (but maybe that makes me a less than nice mother). This really bothered her, I mean even after we left the store, she continued to rant about it.So really - the MRI was uneventful, as an MRI should be. I stopped by x-ray to see if I could pick up her x-rays for the Sick Kids appointment, but they were not there. So I asked to have the MRI put on a disk and we can take it too. And on the up side, the x-ray section was open, so theoretically, I can go pick the disks up on a Sunday morning between now and December 2.

Tuesday, October 21, 2014

So its after the checkup and we found out the date. Well more information than we had. We found out that the surgery should happen around January/Febuary so I will be able to have a normal Christmas. Yaaaay!😄 I can't wait till Halloween though, Im going trick or treating with my friend!oops off track. So anyways the doctor said that hopefully I'll be able to have my surgery in January/Febuary, and that I have to have an MRI on Sunday. For the MRI I have to not move a muscle for 40 minutes, and they figured that that would be hard for me so their going to give me special goggles so that I can watch a movie. Yaah! But seriously, I'm not even going to be allowed to itch my nose! I bet that would be hard even for the most patient person! So more descriptive date, MRI on Sunday, check up in January, and that's all. You've been caught up. I'll talk more later. Bye😀.

Monday, October 20, 2014

News! Results! And no, I wouldn't rip anyone's head off :pSo first thing, my dad was a huge help spending the night so he could take the dude to school, then he hung out here 'just in case the school called while we were away' which ended up being until nearly noon.So on to McMaster. We arrived minutes before 8:00 (after getting lost. Perhaps we wil use the gps next time) to wait to get Pants' X-ray requisition - the receptionist let us in around 8:10 (I was totally pacing) and I budded in front of a brand new family there with their 5 day old baby. Jerk. I apologized - I was hoping to just grab the req and run over to X-ray, but we got fully checked in. Next time I will be more patient. On to X-ray, which was pretty uneventful and quick, then back to the clinic and we hardly sat down before we got called back ( I think I prefer these 8:30 am appointments for that, though the inconvenience with Dude needs to be balanced by my joy of not having to hang out in a hospital waiting room). We had a student doctor and a temperamental computer, so that stay was short, before we got sent back over for more X-rays in a bent over pose. We were back in the clinic and in front of the X-rays moments after returning to the clinic. There appeared to be progression of the curve, but the doctor didn't want to tell me us what the number was (but I saw it written down as ~60) which is roughly 18 degrees more than the first X-ray - without the 1 cm wood block correction since March.This appointment I felt like I was getting more information - things like: surgery will be in January or February. She needs to have an MRI. Ok, maybe my head was going to pop off without more information. The doctor even suggested we visit his medical office, you know, just to show our faces - so we did. There we got a checklist with 6 things that need to happen before surgery. We told them that we would appreciate grouped appointments of possible so as to limit our travel. We were even offered paperwork for Ronald McDonald house, but I think we'll just do the drive and save that space for people who really need it.And if that wasn't enough, by the time I was leaving the office tonight, we already had her MRI confirmed for this Sunday at 9:15 am - I mean wow! She doesn't even play professional sports.So there. I feel like I know a little better what is coming and when it is coming. Avery seems ok, if not pleased that she will make it through Christmas before surgery - and with this schedule, should be mostly healed up by the time summer vacation rolls around.

Sunday, October 19, 2014

I'm scared. I go for my third checkup tomorrow, where we'll hopefully find out when my surgery is, but I don't really want to because knowing when it's going to happen and knowing that it's going to happen are two very different things. But I'm afraid that if Dr.Missuna doesn't tell us, my mom is going to rip off his head, because it's driving her crazy not knowing. Me? I'd be perfectly fine if no one ever told me when it was going to happen until I had to start donating blood, because if I haven't already said so I DON'T WANT TO KNOW!!!! Anyways, as I said at the begining I don't want to know because knowing when just makes it all the more real. Talk to you more after the checkup.

Friday, October 17, 2014

It's not like we're just into the 21st century or anything. We're almost a full fourteen years into it and in trying to get Avery a second opinion with one of the most technologically advanced paediatric hospitals in the country what do we receive? A letter. Mailed to us with a stamp on it and everything.

Image courtesy Canada Post.

In spite of the fact that I had left specific instructions with an actual human that I would like a phone call so that we can avoid any back and forth about times that work we get this letter. As Jodi mentioned, of course it's for one of the few times when she simply cannot make it. There wasn't many, but this was one of them.

So I call them back at the number provided in my mimeographed form letter and get voice mail. I left a message. The next day I call back again and have to leave another message. That afternoon I get a call back! It's someone asking about why I called and how they could help me. Strange, I was clear in my message I wanted to see if we could reschedule the appointment. "Oh! If you want to change your appointment you have to talk to [this other lady]! Let me transfer you." Voice mail. *sigh*

Image courtesy http://www.rjrprops.com/

I leave a message. No response for the remainder of the day but lo and behold they called me back this morning! Turns out they can change the appointment but the doctor is only in once a week for this sort of thing and they're booked right up for a while. December 2nd is the earliest next appointment. Done. Good. Now let's move on, shall we?

Meeting with Avery's surgeon on Monday. Going to go over some things with her on the website he recommended and see if she has any questions. I know I have a big list of them piling up. I'm sure you'll see a few updates from us Monday afternoon / evening.

Wednesday, October 15, 2014

Yay! After 5 months of waiting, there was a letter addressed to the "parent or guardian of" from Sick Kids for the 2nd opinion appointment! Finally! But as this saga would have it, the appointment is scheduled for a day that I cannot be available. Andrew is trying to see if there is another November option that I could be there for, but I am doubtful - so here I am missing another appointment for work, but this conflict is not at my control and I am the only person who can tend to it. So I may miss it. My present question is, if this surgeon has PrincessPants as a patient, would they be planning for surgery now, or wait until she is in her teens? I am not even sure which answer I would prefer, but we will have seen our surgeon by then as well. So I may ask the same thing if I don't feel I am getting a straight answer. So there, good and bad, but progress none the less.

Saturday, October 4, 2014

So my wife and daughter have weighed in so it's my turn to share some thoughts. Jodi mentioned a couple times that if she was incorrect about something that I'd jump in and correct her. That won't be necessary as she got the important stuff right.

Having to absorb the news during that first appointment was pretty tough. Between Jodi and I it's clear I'm the overly emotional one and I wanted so much to hold it together and keep Avery thinking positively that I'm afraid I may have swung the pendulum the other direction afterwards and in the car on the way home. Was I not compassionate enough? Did I hide too much of what I was feeling? Questions that will never be answered that bother me. All I know at this point is that I'm super proud of our little girl. Have you read her post? It was her first blog post and it was about her having to have spinal surgery. Talk about a challenge! I think my first ever blog post was about how I get frustrated with people screwing up my fast food order.

It's been a long, frustrating year since May. On one hand I have every confidence in Avery's surgeon and all of the staff at the hospital, on the other we have the waiting, and the waiting, and the waiting. Have I mentioned the waiting? I see that Jodi just did a post that talked about the waiting. I don't think it can be over stated how frustrating it is. Now, that being said, the big trade off of all this not costing us anything is the waiting. They can only do one surgery a month at the hospital and there's a lot of kids on that list, so we wait our turn. We get Avery checked every few months and when the tables turn she gets bumped higher up on the list. It's not a perfect system (don't even get me started on the second opinion we're still waiting for - and have been since the summer), but it's the one we have. Play the cards your dealt, I suppose.

So how's the overly emotional hypochondriac father doing? Not bad. I work for a medical imaging software company so I have access to all sorts of pre and post op scans from just about every medical procedure you can think of, including spinal surgeries. Pro tip: don't look at them. We don't get the story behind any of the images. They're all anonymous and are mixed in with different reports and a good many of them are extreme cases. Let's just say flipping through a database of random test data is the shortest path to a panic attack.

What I found more helpful was images of actual patients from a website of an actual pediatric scoliosis surgeon. You get to see things like this:

This is an image of a girl five years post op who was a few years younger than Avery at the time of surgery. Her spine angles weren't the same but you get the basic idea of how it all unfolded. I'm not sure how Avery or Jodi feel about it for for me it's comforting to see what they can do and how it works out. It's also reassuring to know that this is a well established procedure and that Avery's surgeon has done more than a few. So there's that.

For now we go to yoga every Wednesday (big shout out to Mike at Breathe Into Motion Yoga Studios who has been amazing with Avery) and we wait (and wait and wait) for her follow up appointment on October 20, and as Princess Pants so eloquently put it, find our own way to make it not so bad.

Friday, October 3, 2014

I am really lucky at my work, I have been assured by my boss and the President that they will support me to take whatever time I may need to get through all of this, and that if there is one thing not to worry about it is work. But here's the thing - I totally do worry. At this point in time I am hopeful (or anxious) that the surgery will take place in February 2015. It is entirely possible my place of work will be gearing up for what could be a massive strike right around that time (and I happen to be the Director of HR responsible for managing our labour relations portfolio). Oh, and one of my team may also need to be off for totally legitimate reasons of her own - at a schedule that is also somewhat out of her control. And I mean we are planning and speaking of contingencies, but none of those options are as good as me being there. So I worry. And complain that I can't seem to get a date or even a closer estimate of a date. And to be fair, I haven't made one phone call about any of this - I leave that to Andrew who is way more reliable and self-contained that I am. But seriously! The Paediatric Canadian Access Targets for Surgery (P-CATS) List suggests that assuming her scoliosis was "stable" she should have had surgery within 6 months of diagnosis, but here we are 6 months later and we still don't have a date. And I don't think it is stable. But I am not a doctor.Our next appointment with the surgeon was just rescheduled (by snail mail in a letter addressed to my daughter!) for 2 weeks later. And I know, it is only 2 weeks, and I chose to believe that it is for some legitimate reason, but still - who doesn't use a phone or at least email?And I don't think I shared that when I asked the surgeon about getting this scheduled at our last appointment, his reply was that he is only permitted to do this particular surgery once per month - so that is quite limiting. Apparently it is a big and costly surgery, so even though there are people needing it, the pediatric hospital we are dealing with prefers the less costly, less time consuming ones. Oh - and we were referred in FREAKING MAY!!! for a second opinion appointment at the leading pediatric hospital in the country and have yet to have that appointment booked either. So yay! free health care, unless you really need it, then get in line and maybe we'll get to you in a few months.I just want a date. I mean is there a reason we can't get booked for February with a one-month move possibility? even that would be better than this. But I will push it again on October 20.And lastly - donate blood if you can. My little girl may need it, and if not mine, someone else's. I can't - the risk of me being a walking mad-cow incubator still exists, and it seems cannot be confirmed (or denied) officially without a biopsy of my dead brain - see, you travel the world when you are young, and these are the consequences.

Thursday, October 2, 2014

It all started when my brother kept itching at a mole. He was itching at it so often that mom decided to take him to the doctors. I didn't go with them so I don't know what happened, but when they got home mom asked me to bend over and touch my toes. I couldn't touch my toes but she got what she wanted, to see my back. And what did she see? A big fat curve.Up Till Now
So this is what happend from when we found out to right now on October second.
You already heard the story from my mom but here it is from me. So my mom comes home from the doctors with my brother and asks me to bend over and touch my toes so she can check for scoliosis. I couldn't touch my toes but I was still bent over enough for her to see the BIG CURVE in my spine. I'm still bent over and she's calling my dad over to see it, just to make sur shes not imagining it. And what do you know? She's not. I have scoliosis (BTW's SCOLIOSIS SUCKS!). So now you now my side of the begining. My mom has already told the rest so I don't need to tell you again. But here's a tip, One of the things I've been thinking every so often now is "I can't do it anymore, I just can't. I wish I didn't have to worry about this anymore. I wish I never had to worry about this!" And yes I bet every one with scoliosis wishes they never got it, but really there's nothing you can do about it except have the surgery so, I deal with it and remind myself that after the surgery I'm gonna be 5'7! But that's only my way of copping with it, find your own way to make it not so bad and DON'T LET IT GET TO YOU!